I'm more than scared. I'm stunned, I'm overwhelmed, I have difficulty breathing when I think of it. My whole body seems to tremble from the inside.
But it has to be done.
This is my relapsing polychondritis story.
Polychondritis is rare. Attacks on the heart aren't unheard of, but they are rarer still.
When I experienced heart failure at the end of April - after 18 months or so of fatigue, dizziness, shortness of breath, muscle weakness, depression and more - and the leaking aortic valve was finally discovered, I heard every day from one doctor or nurse or another that I was a "mystery". Even at this nationally-renowned teaching hospital, none of them had ever seen this before.
Because I don't have heart disease, per se. In fact, the angiogram I had on July 17th showed perfectly clear arteries, which is fantastic.
I have relapsing polychondritis, an autoimmune disease that is most easily compared to rheumatoid arthritis ... except that I don't have swollen joints or daily pain.
Relapsing polychondritis attacks cartilage, usually in the ears and face. I had two episodes like that; the first was in 2011, the second in 2014. The pain was intense, but once I received steroid treatment it faded. I believe, however, that the second episode never really ended, even if the pain did. I believe it continued, targeting my heart, inflaming the aortic and mitral valves until they were unable to pump blood properly and I ended up at the U of A emergency room around 2 am on April 30, 2015.
And now, on July 29th, the aortic valve will be replaced with a mechanical one. But that won't be the end of the story, because it won't solve the polychondritis problem.
I started receiving a monthly infusion of Actemra on the 14th of July, but we won't know if it's going to help for a few months. The idea is to find something that brings the inflammation down. Actemra is a new drug and there is nothing in the medical literature to tell us how effective it will be for me, particularly considering it's a rheumatoid arthritis drug.
In the meantime, I will be taking 50mg of Prednisone for the indefinite future and I'll get some new heart bits installed.
I'll be back when I can.